The pfapa facebook page is attempting to gather location information on PFAPA patients to look at spatial distribution. I have attached a link to the survey here for those not on the facebook page.
The survey asks for where you are located, how many children you have affected, and how many children you have total. There is also a couple questions on treatment that has been used, these are all western medicine options but there is a spot to enter in other treatments. The survey does not collect any other information than what you provide to the form.
Please take a moment to complete the survey. I will make sure the results are posted here.
"SURVEY":https://docs.google.com/spreadsheet/viewform?fromEmail=true&formkey=dGI0c0pLNGc2VlY4Y3RWbzJ3U0h3Y2c6MQ

Hi Rinne. We went through the same thing with my now 4 year old. When she was about 2 1/2 she started getting high fevers (103-104) that lasted 3-4 days every 2 weeks. She was miserable, wouldn't eat, couldn't sleep and would complain that her throat was hurting. The lymp nodes on her neck would also get very swollen. Every time we would take her to the doctor and they would check for strep throat (always negative) and could never find anything wrong with her. They always said it was just a virus and to give her fluids and alternate Motrin and Tylenol. I too was worried about her having all the meds in her system but the doctor told me that as long as it wasn't daily for months it was safe. After months I finally got them to do some bloodwork and they found her white blood counts were a little high. Eventually they referred her to an immunologist. He actually diagnosed her with PFAPA. We started giving her oral steroids when she started having an episode and it usually stopped the fever but not the symptoms. He also started her on Colchicine which was supposed to stop the episodes. I was very uncomfortable with her taking the medicine and had read a lot about kids having success with T&A. So this past August she had her tonsils and adenoids taken out. Since then she hasn't had any episodes. She is finally healthy and actually gaining weight. Having the T&A was the best decision we made! I'm not sure if this helps at all but if you have any other questions let me know.

Hi everyone,
I'm not sure if anyone actually uses this but I am looking for any information possible. My 15 month old daughter has had fevers every three weeks since she was 9 months old. They last 3 days and go up to 104 degrees. She is absolutely miserable during these fever episodes and I am looking for advice on how to bring the fevers down. As right now we alternate Advil and tempra and I'm worried about her system having to much of these. How do you cope? What symptoms do your little ones have? And what medications are they on? What treatments are their doctors prescribing? Sorry so many questions but I am feeling really alone in this and nobody seems to have any answers.

If anyone is interested in sharing your child's photo or story please email me at StopCAIDnow@aol.com
Mike Quick(5x pro bowler for the NFL) and I are producing a video for the Foundations homepage. We welcome your VOICE and pictures to be added to the video. We will also use the pictures or videos at the Gala. The Gala will be covered by the media, so if you do not want the exposure please do not send your picture. We will not list any names or personal information on either the video for the homepage or the Gala. If you send in a video of yourself talking and choose to say who you are and what your child has, that will be the only way we will share your personal information. We want to share your story, your pictures the way you want it to be shared with the world.
Thank you,
StopCAIDnow,Inc.

If anyone has pictures they would like to share on the Foundation website or share their story please email me @ stopcaidnow.com
Lisa Moreno-Dickinson
CEO/President for Stop Childhood Auto Inflammatory Diseases
www.stopcaidnow.com

My son has done very well despite all the seizures. he did (and still does) receive speech therapy for some delays in communication processing ability. He has successfully completed kindergarten and first grade and is an amazing little boy. Because I was aware that there might be some issues i began working with a speech therapist with him at the first signs of delay - my pediatrician was more than happy to make a referral for the evaluation to begin the process. The most important thing is that you advocate for your child - you know her best and your mother's intuition will guide you. There is no harm in having evals and getting the good news that she is on target - that helps you rest easier and enjoy the moment with her. if there is a need for intervention early is better! My son is an avid sports player - both soccer and baseball and very active in scouting. Folks who did not know him as an infant and toddler are completely unaware that he has had such struggles in the past. You and your daughter are in my thoughts and prayers - let me know if you have any other questions.

New Resource

Clinical Trials

CoRDS, or the Coordination of Rare Diseases at Sanford, is based at Sanford Research in Sioux Falls, South Dakota. It provides researchers with a centralized, international patient registry for all rare diseases. This program allows patients and researchers to connect as easily as possible to help advance treatments and cures for rare diseases. The CoRDS team works with patient advocacy groups, individuals and researchers to help in the advancement of research in over 7,000 rare diseases. The registry is free for patients to enroll and researchers to access.

Enrolling is easy.

Complete the screening form.

Review the informed consent.

Answer the permission and data sharing questions.

After these steps, the enrollment process is complete. All other questions are voluntary. However, these questions are important to patients and their families to create awareness as well as to researchers to study rare diseases. This is why we ask our participants to update their information annually or anytime changes to their information occur.

Researchers can contact CoRDS to determine if the registry contains participants with the rare disease they are researching. If the researcher determines there is a sufficient number of participants or data on the rare disease of interest within the registry, the researcher can apply for access. Upon approval from the CoRDS Scientific Advisory Board, CoRDS staff will reach out to participants on behalf of the researcher. It is then up to the participant to determine if they would like to join the study.

Our Resources

Our Community Leaders

Community leaders are active users that have been touched by the rare disease that they are a part of. Not only are they there to help facilitate conversations and provide new information that is relevant for the group, but they are there for you and to let you know you have a support system on Rareshare.